Hi I was diagnosed with lupus last June after years and years of symptoms! I also have Hashitmotos too. After years of thinking I was just a 'bit s***' and a wimp, I was shocked to have a diagnoses and blindly listened to the doctor telling me what my symptoms were! However following a recent flare I've really been thinking about my pain! I'm sure it's not joint pain but muscle pain. My muscles are so weak too and I find stairs and hanging the washing out harder and more tiring than they should be!!! Thinking back it's always been this way - I have a really clear memory of being in dreadful pain from carrying an empty bag on my shoulder 20 years ago! Is this sort of pain and weakness normal? I'm seeing my doctor on Friday and want to start to feel in control of these sessions. A year on I feel no closer to understanding how this disease affects me as an individual! Thanks.

7 Replies

Hi Zoeblu, I think reflecting back after diagnosis is something many of us do. For me it was like finding the missing pieces of a jigsaw, I've had many 'lightbulb' moments where I've suddenly remembered something that happened years ago and feeling I now had an understanding or explanation for it.

For several years before diagnosis I couldn't explain what was going on other than I felt tired, weak and couldn't explain why. Friends and colleagues would say that they all suffered tiredness as professionals and parents and that it was normal, I couldn't explain how bad this was and how much it affected me - when I was diagnosed and started treatment I kept saying my 'body hurt' and later realised that my muscles were the cause. Now I often get joint pain, usually certain joints for periods of times, but the overwhelming muscle aching and tiredness is still a prominent part of my illness.

I'm sure you'll read on here that everyone's symptoms are individual to us, and as the doc's say - if we lined all SLE patients up in a row everyone would have a different group of symptoms. Whilst this is frustrating to hear I know I have to accept that there aren't always answers.

Hi Zoeblu! I have had a lot more muscle pain than joint. Walking on a level service is OK but if I have to go up or down - even only a slight incline - I can feel it. Going up and down stairs hurts. Usually I feel it mostly in my thigh muscles, not the pain of to much exercise, but more of a general ache, feel weak and heavy.l This last week my legs have been aching from hips to toes, not real bad just real annoying. I have found that it doesn't matter if I take it easy for a few days or try to stay active they feel the same. So I try to walk or work through the pain then at least I am still getting my exercise. Yesterday, I did not do much of anything and my legs bothered me all night, so today I will go for good walk and then I can feel like I hurt for a reason.

Hi thanks both! I have told my doctors that I don't really suffer with joint pain but they seem to think I do! I guess the positive thing is there's no joint damage! I do walk a couple of miles each day but that's all the exercise I'm getting which is getting me down a bit as I used the run! Strangely it's not moving that causes the most amount of discomfort - I find standing still really painful - all down my back and legs. In your experience do doctors recommend anything other than drugs? I'm trying a gluten free diet and taking turmeric capsules daily! I felt great for about three months (after starting turmeric even my feet stopped hurting) but following a rather busy/stressful time at work I caught a cold and have been flaring since!

Have you had a CPK test? CPK (or CK or Creatine Phospho kinase, or Phospho-creatine. ) is a muscle bi-product and it causes cramps and muscle aches. Some of us naturally produce the stuff in abnormal amounts and others as a result of taking Statins. Co enzyme Q10 might help.

I've no idea! The doctor isn't concerned about my weakness after a 30 sec test to see what my resistance was like! It was fine as the weakness occurs while I'm trying to lead my everyday life! Hey hoo - I'm told I need more exercise so I'll try that and I've started to take L-glutami be which is an protein that helps with muscle stength! I will ask about these tests at my next appointment - thank you!

This is very interesting. I started on steroids at the end of this January (for allergic bronchopulmonary aspergillosis). Happily, the fungal ball I had in my right main bronchus has now gone, so the steroids (plus anti-mucolytics, inhalations, etc.) seem to have done the business. However, there was the inevitable array of yukky side-effects and, since reducing and then trying to stop the steroids, I have experienced muscle pain and weakness. Same deal as Zoeblu - trouble getting up stairs, walking up even slight inclines, hanging out washing, washing my hair etc etc. Didn't get those problems before steroids. Is it steroid-induced damage? Steroid withdrawal symptoms that will pass? Or indication that I may have 'progressed' from 'just' APS and Sjogren's to perhaps mild Lupus as well?

I have also noticed greater photosensivity - that I never used to have. Plaquenil (that I've been on for 8 years with no apparent problem)? Lupus?